Wear Grey

Choose Grey. Change Lives.

Right now, more than 60,000 people in the UK are living with a brain tumour. Each diagnosis is devastating and comes with many invisible challenges.

This is why we need you to shine a light on what the outside world can’t see.

The invisible impact of a brain tumour

Memory loss, uncertainty, fatigue, and loss of identity all impact on the day-to-day lives of people living with a brain tumour. These challenges go unseen, causing isolation, fear and confusion. Our strategy for the next 5 years addresses these hidden challenges, and we need your help to make the world understand.

Changing perceptions

Every single day of the year, our expert and passionate team are creating a better world for people living with a brain tumour, and their families. In our efforts to improve brain tumour care, we work with hospitals and public bodies across the UK to create change. We publish vital resources to help people understand treatments and choices, and we help people live life with a brain tumour to the fullest with our expert coach led support. Our caring and highly-trained support specialists are just a phone call or email away, and can be contacted 24/7, meaning no one is ever going through their journey alone.

What’s next?

Join our mission, so we can continue to help thousands more people after they receive the devastating diagnosis of a brain tumour.

To join us, simply pick a day to Wear Grey in the first week of October! Let’s come together. Let’s share our knowledge. Let’s empower the world to understand. Just because we can’t see it, doesn’t mean it’s not there.

Let's make the world understand.

Join us this October.

Pick a day in the first week of October and get together with your loved ones. Spread the word about the invisible challenges of life with a brain tumour, and raise funds so that people facing diagnosis get the support they deserve.

Shop Grey!

Struggling to find a touch of grey in your wardrobe? Don’t worry! We have a fabulous selection of grey themed merchandise which can be viewed and purchased via our online shop. From t-shirts to bracelets, and wristbands to pin badges – there’s something for everyone!

Don’t forget that you can buy and sell any of our merchandise, which helps to spread the word. We’ve just launched a range of items perfect for daily wear, meaning you can show your support and raise awareness all year round.

Why Grey?

When you wear grey with us, you’ll be joining a community of incredible people who have raised over £120,000 over the last seven years. We wear grey thanks to Shaun Skinner, who approached brainstrust in 2012 to help him bring an idea to life. ‘Go Grey for a day’ existed in the US, but Shaun had recognized a strong desire in the UK community to raise awareness of brain tumours, ‘the forgotten cancer’, this side of the Atlantic. It made sense to join the two events up, and with the US event in October, so Wear Grey was born.

Sadly Shaun died from his brain tumour in January 2017, but along with his passion for helping others, Wear Grey is part of his incredible legacy, and for many of us an important occasion to remember loved ones.

Grey is the internationally recognised colour that represents brain cancer, and when we wear grey we stand in solidarity with everyone affected by this devastating diagnosis.

brainstrust’s Impact this year

Our vision is for everyone with a brain tumour to feel less afraid, less alone and more in control.

30,000people use brainstrust’s accredited online information and support

2351 members of our online community helping each other to feel less alone, less afraid and more in control.

“This note is to say ‘Diolch o galon’ (thanks from our hearts). We are so proud of you – you don’t know us yet we lean on you, you have no obligation to help us but you do, and every time we feel down, you inspire us to keep on fighting.” – brain tumour carer, Wales.

Registered with the Charity Commission for England and Wales as Charity No. 1114634 and with the Office of the Scottish Charity Regulator as Charity No. SC044642

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

Select the year of diagnosis using the drop down menu.

Select your patient group of interest from the four drop down menus in the following order:

Tumour group

Age at diagnosis

Region of England

Gender of patient

To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

Data is not yet available for the selected year from Public Health England.

Data is not available because the data quality is too poor to release this statistic.

Data is not available as the statistic is not appropriate for this group.

Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.